Thanks for visiting, and welcome to my blog about life with Meniere's Disease!
A 'unique' and very challenging condition to deal with, life with Meniere's Disease can be scary, isolating, and immensely frustrating. If even one person who suffers like I do can find this blog, and feel some sense of connection, I will be happy!
My story with this condition has many hills and valleys, as does everyone's. The basics of my story go something like this:
I was diagnosed with Meniere's younger than most - I had only just turned 19 when I had my first 'spell', as I refer to them (six years ago!). I was in university, and living in a townhouse style student accommodation in
St. Catharines Ontario. One of my first spells came in the middle of the night - waking up dizzy and nauseous was terrifying - I managed to 'sleep it off', but when I had 2-3 more of these spells, I decided that this was NOT okay, and that I needed to get checked out. Not only was it strange and scary, but it was interfering with my life - I was a varsity swimmer, involved in student government and other volunteer pursuits, had a part time job and school work, too! The nurse at the health clinic immediately assumed I was pregnant (spells of nausea, extreme fatigue), and tested me for that. Once it was determined, a few times over, that I was NOT pregnant (sometimes I think that would have been easier...), I was checked out in further depth. Unable to find much, I was referred to an ENT. It was determined that I had a loss of hearing in one ear, and more tests were done. Many ear tests, and at least 4 MRIs, and nothing really in way of a diagnosis. Meanwhile, I was still getting these spells - in the beginning they were almost all the same, the room would spin, my stomach would spin, and I was just generally miserable. The spells seemed to get better, lifting from once a week to once a month or so, which allowed me to go about my life a little bit more 'normally'.
I was finally referred to a 'dizziness specialist' in
Toronto. After several tests, some of which actually MADE me dizzy (seemed counter productive!), I was offered a diagnosis of ‘Meniere’s Disease’. While this didn’t really mean much to me or my family, it was a relief to have a name for what I had been experiencing. I was followed by this doctor, have gone though several more tests, tried numerous drugs, and many other treatments for my condition.
I now live out in Jasper,
Alberta, at least four hours from the nearest specialist who may be able to offer me assistance. I recently made an appointment with my doctor back in
Toronto, for August when I know I will be back in
Ontario. The last few years I have been up an down – sometimes enjoying more than three months without a ‘spell’, sometimes feeling crappy everyday but managing to exist, sometimes being hit with a debilitating spell unexpectedly on days when it is terribly inconvenient. I have tried being ‘drug free’ or taking my prescriptions religiously, I have tried not eating salt, I have tried meditating and crystal healing, I have visited naturopathic doctors and tried various remedies, and yet it seems that Meniere’s will simply do what it pleases. I will never stop searching for something that helps, because while I respect that I could suffer with something much worse than Meniere’s, and that it not a fatal condition – it is still something that I would not wish on my worst enemy.
Please feel free to contact me with questions, stories, thought or feedback on my Meniere’s musings. If you are reading this, and like I did, feel alone, frustrated and occasionally pretty hopeless, know that you are NOT alone. There are others like you, no matter who or where you are, you are NOT alone.
